AKRON, Ohio — From the time she was six months old, Taya Arne, now 9 years old, has been insulin dependent, diagnosed with infant diabetes.
“And then right from the beginning, like any other neonatal diabetic child, needles you know, every meal checking her blood at least six to eight times a day, trying to keep her blood within a normal range,” said her father Curtis Arne.
It was during a routine medical visit last summer that Akron Children’s Hospital Endocrinologist Dr. Supamit Ukarapong first mentioned to Taya’s family a registry that was trying to identify infant diabetes patients with a rare genetic mutation.
Encouraging studies have shown that patients with the right genetic makeup can actually get rid of their insulin completely and exchange it for a couple of pills.
After studying her history, Dr. Ukarapong felt Taya might qualify.
After sending off paperwork and samples to the registry at the University of Chicago, Taya and her parents got the news they had been hoping for in March.
On March 29, Taya was admitted to Children’s Hospital, where they started her on the medication and monitored her.
As they noticed an improvement in her blood sugar levels, Taya’s insulin levels were gradually decreased.
On April 26, she went back to the hospital, and the following day she was completely off insulin.
“Actually, the levels, her blood sugar levels, are improving with this oral medication, better than when she was receiving insulin,” said Dr. Ukarapong.
For all of her nine years, Taya’s diabetes has left her analyzing meals, careful about her activities and her schooling. When her family went on vacation, they had to worry about her medical needs. Going through airports with an insulin pump meant extra security checks.
“It will be so fun to go on vacation this year with, you know, a bottle of pills and just her testing meter. Usually we have a mini suitcase of just medical supplies,” added her mother Carolyn Arney.
Although they are still monitoring her carbohydrates, Taya also can now eat normally, just like her brothers and sisters.
She takes three pills at breakfast and three more at supper time, and her blood sugar levels are remaining consistently normal.
The registry for treatment is at the University of Chicago, where researchers are trying to identify as many people as they can who qualify.
They have given the Arneys optimism that Taya may never again need insulin for the rest of her life.
Dr. Ukarapong explained the genetic mutation affects the pancreas, allowing it to produce insulin but not release it. The medication simply helps the pancreas do what it is supposed to do, so the patient is actually making their own insulin.
Of three patients Dr. Ukarapong referred to the registry, only Taya had the right genetic makeup, but Dr. Ukarapong says there are others. There is simply no way to really know how many there are.
“Like, when I first heard about it, I could barely sleep at night,” said Taya, adding, “I’m just glad it happened.”
Registering for the program costs nothing. The applications can be found at the registry’s website: http://monogenicdiabetes.uchicago.edu/.